I apologize that it has taken me so long to update. As soon as we got home from the hospital it was nonstop chaos trying to get things back in order. The beginning of this school year has been extremely busy but I am finally getting a few minutes to breathe.
So-the rest of our hospital stay. We were moved down to intermediate care a couple days after my last post. We held off on feedings for another week and then they were introduced very slowly on a continuous 24 hour schedule so that she would not get too much at one time. She did very well and we were able to progressively move up to her goal tube feedings.
Her blood count continued to drop and she did eventually receive blood before we were discharged. Just as the surgeon had said she would, she continued to have quite a bit of cramping. She was still very uncomfortable and would grind her teeth from the agitation and discomfort. This was bad on many levels. First because she was chipping off pieces of her teeth. Additionally she was keeping her tongue forward since she no longer had the open cleft in the back of her throat to breathe through. She ended up grinding her teeth on her tongue and was sloughing off strips of her tongue several times a day. It was a constant ordeal to try and keep her from doing it. The more she did it the more aggravated she got and would do it more. We asked the doctors for suggestions and no one had a solution. Every possible idea was either a choking hazard or an airway hazard. One night she bit off a huge piece and it took several nurses to get the bleeding to stop. The only solution we had at the time was to keep her sedated and comfortable. She wasn't taking a paci but I thought if I could make it hard she might like the pressure. I stuffed as much gauze as I could in it to make it hard and guess what? She liked biting on it. The problem was keeping it in 24 hours to keep her from biting. Once we were home my dad created a strap that hooked on her paci and went around her head to keep it on at night. Worked like a charm. Thanks Grandaddy! A team of pediatric surgeons, plastic surgeons, and pediatric dentists didn't have a workable solution. Well, when you are the one watching the torture, you find a solution. The only possible plan the doctors had was to remove her teeth. I am so glad we did not have to go that route. She continued to bite her tongue off and on for about a month after returning home. She has quit now aside from the rare occasion. I am happy to say that her tongue has finally returned to its normal shape. She will probably never have taste buds on the tip but at least it is a workable muscle again.
When we were finally discharged we had spent a month at the hospital. We went in for a 2 day elective surgery and got far more than we bargained for: (3 surgeries, bowel obstruction, uncontrollable bleeding, partial collapsed lung, emergency respiratory resuscitation, injured tongue, edema, blood transfusion, shock) Makes coming home and seeing this wild girl rolling around even that much sweeter.
Since being home Teryn has slowly regained the functions and abilities that she had before. It took a little while and we were concerned at first because she had lost so much in her developmental progress. She is definitely back to herself again. Unfortunately her reflux has returned. Not as bad as before but it is still so frustrating to think that she went through this surgery this summer to revise the procedure, she had so many complications from it and now the reflux is returning. Because of this her oral feeding therapy has been put on hold. Her therapists are not willing to take the risk of her aspirating. We will give it some time and then reevaluate the decisions.
Here are a few pictures of what this silly girl has been up to since we have been home.
Hanging out with mommy while I work in my classroom.
She fell asleep on the entertainment center. She has been playing hard.
She was trying to get her ball and the silly girl got stuck under her seat.
Another day of playing hard.
She is figuring out how to get into small spaces.
Thank you so much to everyone who prayed and prayed and prayed. This was by far the scariest time we have had and things could have gone very badly. I praise God that we made the decision to stay at the hospital and were able to have access to the staff and resources. Otherwise, outcomes could have been very different and we are very aware of that.
"Thank you Lord for directing our path. We acknowledge you in every thing and every way. Even when things are hard and confusing we know you are in control."
During her second game she hit the ball without the T on the first try.
This past weekend we were very lucky to be able to go to the local Wonderworks. They were offering special tickets for teachers so we invited Uncle Lee, Aunt Cheryl, and Trista to go with us.
Even though Teryn slept through most of the activities of the day, we still had a wonderful time.
Making silly faces at mommy during lunch.
She is figuring out how to get into small spaces.
Thank you so much to everyone who prayed and prayed and prayed. This was by far the scariest time we have had and things could have gone very badly. I praise God that we made the decision to stay at the hospital and were able to have access to the staff and resources. Otherwise, outcomes could have been very different and we are very aware of that. 
